Disability Services

Baroness Hollins Excerpts

Thursday 10th January 2013 Lords Chamber

[Baroness Hollins]

My Lords, people from BME communities are significantly under-represented in the uptake of learning disability services. This is despite the much higher prevalence of learning disability in certain BME groups. For example, it is up to three times higher than average in some south Asian populations. It is also higher than average in the African and Caribbean community. The number of people with learning disabilities from minority ethnic communities is predicted to increase substantially over the next 20 years.

Research shows that minority groups have a different experience of mental health services and different outcomes from treatment compared to the white majority, as explained by my noble friend Lord Ouseley. The noble Lord’s comments also apply to people with learning disabilities who also have mental health problems. Valuing People Now, the Government's three-year strategy published in 2009 for people with a learning disability, spelt out the changes needed to make sure that the most excluded groups would benefit fully from health and social care services. I agree with many other speakers that failing to take into account differences in race, religion and cultural identity is the same as ignoring the needs of what can become a vulnerable and excluded group.

Black and minority ethnic groups have been shown to be at increased risk of mental health problems and those from black communities are more likely to be admitted to hospital than those from other ethnic groups. There are various reasons thought to contribute to this increase. For example, for first generation migrants, the actual event of migration is often a traumatic occurrence with major disruptions to family and other lifelong attachments. Many have difficulties adapting to a new culture. Migration is in itself a risk factor for psychiatric illness, particularly psychosis. However, following migration, communities can experience other challenges and insults that can further predispose them to mental health problems and subsequently maintain them.

Some have uncertain asylum status, living in limbo for several months or years while their application is considered, and rejection of asylum may lead to significant mental health problems. Although 90% of asylum applications made in the United Kingdom are rejected, the majority stay on, often because they have no passport or their country of origin will not take them back. Those allowed to stay have the same rights as citizens, but the experience of earlier traumatic events, coupled with new problems related to acculturation, may impede their uptake of services. Several studies, including one by the Leicestershire Learning Disability Register, found that people with learning disabilities from minority ethnic communities have similar levels of mental health and behaviour problems, but that their carers experience significantly more stress and receive less support than their white European counterparts. Low household income and more than one person with a learning disability in the household were also associated with high carer stress. It is perhaps significant that one study found that 19% of south Asian families have more than one child with a learning disability.

Differences in perception of mental health within various cultures and poor knowledge of availability of services can also significantly influence the health-seeking behaviour of people who have mental health problems and individuals with learning disabilities or their families. Some of these barriers are easier to overcome than others. Some take time and dedication and a truly person-centred approach—no two service users are the same. All available research shows consensus in terms of a lack of awareness of services being a major barrier to people from minority ethnic communities accessing care. Mencap and the Institution for Local Government found that families and carers from BME communities knew little about the services they could use or how those services operated and what their rights were. Information about services was so often found to be inaccessible and not in the right language. Language and communication difficulties present problems for potential service users and their families in terms of accessing and using services. Often clinicians have to rely on a family member to interpret and this can lead to further problems in terms of confidentiality and disclosure of information, which may be particularly concerning if there are safeguarding issues.

It may also be the case that family members who interpret select the information they want to disclose, thus withholding important information. When I was acting in clinical practice, I certainly had that experience. Even when professional interpreters are used, families may be hesitant to disclose personal or sensitive information via an interpreter from that same small community. Cultural factors and belief systems may have powerful influences over how families respond and may have significant impact on how or if support is sought. Some cultures may have different ideas about the cause of a disability and choose to seek more traditional healing methods. They may not be interested in exploring western medicine or western educational, psychological or rehabilitative programmes. They may even misunderstand the concept of learning disability and expect a “cure” for their family member's problem.

Research by Mencap showed that many families and carers feel isolated and powerless. A common misconception is that people in BME communities get a lot of support from extended families—which sometimes they do—and therefore need fewer services, such as respite. One professional working in learning disability support within a predominantly Bangladeshi community said:

“The shame and taboo surrounding learning disability makes it difficult for mothers to get help and support. They get little practical support from their families and little emotional support either. The situation is so bad that mothers are more likely to seek help from agencies that are outside their community rather than from Bangladeshi specialist agencies”.

Family roles and dynamics vary greatly across different cultures. Within some cultures, family structures and relationships are hierarchical and women can have a very different role from that in western cultures. Consanguinous unions may be acceptable and commonplace and may contribute to the increased prevalence of learning disability and other severe disabilities. If there are clashes between the views of families and professionals as to which decision is made in the best interests of the patient, a family may subsequently avoid engaging with services. A colleague gave me an example: she was requested by the forced marriage unit to conduct a capacity assessment for consent to be married. The man was a Pakistani gentleman with moderate learning disability who had been taken to Pakistan a couple of months earlier to be married. Although the man was clearly very fond of his wife, he had little understanding of the concept of marriage or of sexual relationships. His parents believed that the marriage was in his best interests and my colleague formed the view that interference by professionals would have caused great conflict between the family and services, and possibly resulted in future non-engagement with professionals.

Currently, many services lack appropriate provision for people from BME groups with learning disabilities. They may be culturally insensitive, not taking into account issues such as the gender mix of services. Many families prefer their disabled female relatives to be cared for in a female environment. Other services perceive BME communities as a homogenous group and may not take into account the many differences found between different communities and fail to identify service users as individuals with their own set of unique needs. There are many incidents of people falling through gaps in the care system. For example, the eligibility criteria used by services mean there must be a clear history of developmental delay. However, such histories are often not available in first generation migrants and problems in language and lack of educational opportunities in their country of origin makes such assessments even more complicated and sometimes invalid. People may be lost as follow-up, due to frequent changes of address during transition from child to adult services. Improving services requires a considerable amount of flexibility from providers in order to engage with the various minority communities effectively.

I want to end by thinking about the importance of cultural competency as an essential component to our services. I hope the Minister will agree above all that a person-centred and culturally competent approach will be key to the success of services in the future.